Ep. 7: Sharing One Small Win With Listeners

Severe Autism Mom & podcast Host Shannon Chamberlin shares her family's story of a recent "win" they have experienced regarding Shannon's son's behavior.

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Transcript

SUMMARY KEYWORDS

doctor, severe autism, son, risperidone, cannabis, hospital, episode, medical cannabis, eloping, dialed, parenting, visit, started, throw, emergency room, day, asked, head, prescription, helped

SPEAKERS

Shannon (100%) 

Shannon Chamberlin

0:16

Hello, and welcome to The Parenting Severe Autism Podcast. I am your host, Shannon Chamberlin. I'm so happy that you're here with me today. Please remember, I am just a mom. I'm not a medical or psychiatric professional, as I have mentioned in my other episodes, but I believe that everybody has a story and that everybody's story can help somebody else. So I'm sharing our family's severe autism story on this podcast, and I hope that it reaches somebody out there and maybe prevents something before it starts. Or maybe it can help save a relationship. Something good has got to come of this. Today, I wanted to share a story of a small success that we recently experienced at the doctor's office.  For the past seven years, I think, our son has been absolutely hell at the doctor's office, he tries to destroy the entire place, he tries to push the workers around, he'll try to get them to throw their files all over the place, he'll storm around and try to scare everybody out of the building. It's just been an absolute nightmare. This all started when he was about 15, and I think what really kicked it off was that he had been unable to go to school for about two weeks because there was something wrong with his foot. And we couldn't get his shoe on his foot without causing him pain. And when you looked at his foot, there was nothing swollen or anything but the toes were turning colors. And when we took him to his primary care, we all looked into a condition called Reynaud's where the digits begin to turn rainbow colors. And it's something about circulation, it can be caused by either extreme cold or by I believe vascular stress. And they believed that it could have been a little bit of both because we did live in northern Wisconsin. And so he wasn't able to go to school because he couldn't get the shoe on and there was really nothing you could do because this condition has to resolve itself, is what we understood. But after a couple of weeks after visiting that doctor, it hadn't gotten any better, and in fact, his other foot had started to do it too. So we made an appointment with a foot doctor. And when he realized where we were and that we were there at a foot specialist - somehow he understood that - he absolutely went insane. And it was the worst behavior we had ever seen up to that point, and that's when he started trying to destroy the office and push people around and knock all their papers out of their hand and just just really screw everything up. And ever since then, every single doctor's appointment, except for a dentist has been an absolute nightmare with him. And it's just regular checkups. Well, about four years ago, he did start getting violent with us, attacking us and things like that. And then last year in 2021, early in the summer, he started eloping so that's when things got to a new level of seriousness because now his life was at risk. Because he was eloping day or night, it didn't matter. In the middle of the night he would run away naked and we didn't even know, and you know, this is just super dangerous. So he began to run into traffic... you can check my other episode on eloping to learn more about all of that, but we met with his new doctor. We had to fire his other doctor a few years ago when he started attacking us because we asked for him to be certified for medical cannabis. And that doctor refused and pretended that he would get fired. We learned later that that was a lie. But during that appointment, we asked that doctor, "Well, if you can't help us with cannabis, what prescription would you recommend? Because he's really out of hand and we can't handle him." And he said, "Well, at this point in his life, there's nothing there's just nothing that would help him." Ladies and gentlemen, that doctor's name is Dr. W. Carlson out of Peoria, Illinois. What a fraud. We fired him immediately, we found a better doctor with a different hospital who was willing to certify my son for medical cannabis but also understood the danger that he and we were in with his new behaviors. And she really wanted to try to help us but she was not familiar enough with autism at all, or the medicines that might be able to help to prescribe anything at the time that we asked her last summer. So she recommended that, hey, if it's an emergency, the best thing to do instead of waiting for the referral system within the hospital for psychiatric referral is just to take your son to the emergency room for a psychiatric evaluation. And it's a specific emergency room that you have to go to. And this was a very hard decision for us because we felt that they were going to have to keep him overnight and we went through a whole grieving process and a whole guilt process and it was only over a few days because we didn't have time to consider a lot we really had to get this done.

Shannon Chamberlin

4:56

So all of that the grieving and the guilt and all of that went within just a couple of days, we processed through all of that. And then we began to look forward to it like, oh, wow, we can actually get perhaps a 24 hour break and know that our son is safely kept in an emergency room hospital bed, and that they will be monitoring him to really be able to help him, this could be really great for all of us. And we began to look forward to it, we got him his favorite pizza, fed it to him for lunch. And this was, you know, where you're getting ready to take him to the emergency room, you're still feeling all the guilt you're trying to give him like his last meal kind of thing, even though you know he's coming back. But we just were doing everything in our power to let him know that he was loved before we took him to this place and dropped him off with a bunch of strangers to be probably locked up for a whole day, you know? Well, when we got to the ER, it didn't work that way. He performed perfectly, we really wanted them to know what we were going through. And it was like he knew again, like the what's the difference between a regular hospital and this hospital? For some reason, he was able to feel that and he knew, it seems, that he was at a psychiatric evaluation hospital. And he performed beautifully. It was like watching an exorcism. And that was just in the waiting room. He was attacking me, throwing furniture, trying to escape, trying to jump through windows. I mean, it was it was stellar. I couldn't believe it. My jaw was on the floor.  Thank God, his dad was with us because there were some very strong, scary looking orderlies standing by and they would have been on top of my son, if my husband hadn't been there to handle him. However, we got taken back. And I was just like, oh, in my head, this is great. He's giving them exactly what they need to see how to help him. And they didn't even have to keep him overnight yet. So this was perfect. What a great start. Well, it turns out, we all three got locked in a cell together for four hours with him behaving that way for about three of those hours. It was insane. It was the worst thing ever. And we finally had to start throwing fits ourselves as the parents just to get out of there. And no one had seen the kid, no one had talked to us - nothing, just a nurse. And supposedly there was a psychiatrist in an upper level of the hospital watching on camera, but it wasn't important enough to meet with us about it. So we start fighting with them. And finally we're like, you know, you need to call his doctor, I kept calling his doctor and having the doctor try to contact the hospital and it was just a mess. But we did leave there with a prescription for Trazodone. And that helped him get to sleep. And then the whole point of that visit, I guess was to quickly put the psychiatrist in contact with the primary care provider and have them get their heads together and agree on a treatment plan with prescriptions. We have never had our son on prescriptions before. And I'll talk about that in another episode, why we did what we did, how long it worked and what we believe we gained from that decision. But this is brand new to all of us. He's never been on meds. He had been on cannabis for over a year - for about two years, at that point. We didn't wait for a doctor, obviously.  I started treating him with cannabis as soon as I could. And it worked for a little while but he developed such a tolerance to it. It was amazing. So it just as an herbalist, someone who's studying to be a Master Herbalist - that's me - I've always believed my entire life in the power of natural medicine and all things of that nature. But much to my dismay, our son does not respond to that. Not that alone. It does help. It's a great supplement. But that alone is not a great treatment for him, unfortunately, and it really hurts my heart to admit that but now I know that some people just cannot be helped with a natural method on its own. It may be a great addition to a treatment, but you cannot rely on natural treatment alone for some people. So that's sad, but he's been... once the two doctors got their heads together, they put him on Sertraline, and Risperidone or Risperidone and the Sertraline, there's a lot of wiggle room with that. So we started off with a very small amount, kept having weekly video updates with our primary care and explaining the changes and and getting him dialed in. And she finally realized that well for autism, the standard dose is much higher than what she had been recommending. And you know, for a regular person who would have a different type of problem and needs Sertraline, their dose would be much lower, but my son's dose can go all the way up to you know, four or seven milligrams per day or something like that. And she got him dialed in to be pretty good. And since that has happened that was about,  when we got really dialed in, t was about the end of August of 21 and we're now at the beginning of August of 22.

Shannon Chamberlin

10:00

And some of the things that we noticed right away were that he... Well, he started sleeping a lot. He had been an insomniac for a number of years, and there was nothing we could do to make him sleep, and I felt so bad, but that Trazodone helped him with that. But then he also started kind of catching up on sleep throughout the day. But also he started being able to sit down in a recliner and watch a full movie with us or another family member, like his grandfather.  He could never watch more than three to five minutes of a movie before. So that was really nice. On Father's Day, this year, he - I caught him - and I didn't catch him, but I walked in into a room, he had been watching TV on his own, no one was around, he was in control of the remote. And he was watching the WNBA games. And that was his choice, and I thought that was really cool. And I asked him do you like WNBA? "Yes, I like it." So now I know he likes women's basketball. That's awesome. That same day, there was a party in our neighbor's yard. They're like family to us. And there was a lot of kids and grandkids and just everybody was over there, there was a cookout and they have a pool, and he's always going over there to the pool. Well, over the past several years, he hasn't been able to go over there when others are over there because of his stimming and his violence and all of that. So this year on Father's Day, he calmly walked over there, he calmly got in the water. He didn't drown any of the babies, which is what they were always afraid of before. He didn't cuss at them. He didn't yell at them. He didn't swing at them. He didn't do anything wrong to anybody. And it was awesome. He calmly stood there in the pool and cooled off. And you know, he visited.  He just said, "Hey, how's it going?" That's about the extent of his words. But, 'I love you. I love you. I love you. How's it going?' And you know, but that was nice. And so that was all in one day, he did not have an attack at all the whole day, which was great. So these are some of the small wins we've had since he got on these pharmaceuticals. We do have to supplement him throughout the week with medical cannabis gummy, but it's not even all the time. It's just if there's a storm coming or if there's a full moon coming. You know, those times when things get a little hairy?Those times is when we just feed him a gummy and it'd be a 10 milligram gummy, and it gets him through his day as if he were not having any issues at all. But I just wanted to tell you this most recent visit to the doctor, we're very scared - even the doctor is nervous about this stuff. You know, because her staff gets abused. Everybody gets abused, the people waiting for other doctors in the waiting room, everybody suffers when he gets there. And this time he was fine. He was happy and jovial and he said hi to a few people but he wasn't too loud. The doctor did hear him in the waiting room and she knew he was there. And I heard her in the hallway say okay, Jacob, I gotta go see Jacob right now I got to get it done. Because she knows that he can't stay there for the 90 minutes that most people are subjected to at a doctor's office these days. So she came in there and he was kicked back on the little bed thing, and he was playing with a stress reliever game on his dad's phone, and she was amazed. She looked at him like she was in the wrong room, and she had the wrong patient. She couldn't believe it. Her jaw was on the floor, even with her mask on. And at some point during our conversation, he just looked at her and said, "Hey, how's it goin?" And she couldn't believe it. She couldn't even answer him. She didn't - She was dumbfounded. And that was amazing. He usually is banging his head off of the concrete walls in the exam room. He's running up and down the exam room hallways, if they try to give him any kind of fidget, you know, some kind of sensory item, he'll snatch it and then throw it at them or throw it at somebody else or throw it try to get it through a window. You know, I mean, just complete destruction. There was none of that this time. He didn't need his helmet. I didn't need a helmet. Nobody else needed a helmet or any kind of protection at all. It was really, really amazing. And that is our small win for... the year, I think as far as doctors go, it was amazing!

Shannon Chamberlin

14:03

So I just can't say enough about the new program he's on,  a little bit of cannabis here in there and a steady diet of Trazodone, Sertraline and Risperidone or Risperidone. It's been really fantastic. I've heard from a lot of other parents in the severe autism world and they're having a lot of trouble with the kids, same problems, but I haven't heard that those medicines have been used yet. They're using other medicines and their kids are not responding well. I think this combination for our son has been a lifesaver for all of us. I know some of you out there have have had Risperidone OR Sertraline, but not them together. It might be something to consider.

Shannon Chamberlin

14:46

I know you're probably out of time for this episode with the busy lifestyle that we have. So I will wrap it up and I hope you'll find my next episode. I'm gonna just start from the beginning of how all of this started with me and this kid.  As you know, I'm a stepmom.  I came into this when he was already six years old and I've just been learning ever since. hopefully something helps you or someone that you know.  Please remember, you can support my show by clicking on the Support a Show link and it'll take you to buy me a coffee. You can buy me as many coffees as you like. A portion of the proceeds from things like that with this show will go towards helping severe autism families in need of safety or sensory items that they cannot afford on their own. So, your support means the world to all of us. You can visit my website at psa - that's short for parenting severe autism - psa.buzzsprout.com, where you can access my show notes and any product recommendations or anything like that, that I may have per episode.  You can access all of my episodes on there, and you're also welcome to visit my Facebook page. It's not much, it's just something that I have for social media where I can post the newest episode of my podcast so you're welcome to go and follow that if you would like. Whatever works out best for your lifestyle, and that is just Parenting Severe Autism Podcast page on Facebook. I'm really not that big int o social media, so if there's something I'm missing on that to direct you, I apologize but it is just parenting severe autism podcast and that is a page on Facebook. If you have any questions or if you have a story that you would like to share with me or the rest of the severe autism community, please feel free to send me an email at contact dot parenting severe autism@gmail.com Thanks again for listening. I hope you have a great rest of the summer. You hang in there. You're a superhero